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Polycythemia Vera and Secondary Polycythemia

Hi, I'm bridgetteg

I don’t see any resources for Polycythemia. I have my first appointment scheduled for Feb 18th. I was able to find a lot of information on Polycythemia Vera, but not a lot on secondary. Does anyone have any information and/or has anyone here been through either of these. Looking for support. Many thanks in advance.

  • Post #1
  • Sun Feb 10, 2019
Hi, I'm KAREN E J.

I have secondary polycythemia. What would you like to know?

  • Post #2
  • Mon Feb 11, 2019
Hi, I'm bridgetteg

Thanks for your reply. I am wondering how long it takes (approx) for the doctors to find the cause and then how long until you start feeling better. I am tired all the time and want my life back. Although I am not sure this is the cause. Looking for answers. Perhaps a bit impatient.

  • Post #3
  • Mon Feb 11, 2019
Hi, I'm Elliott M S.

there is a very active Facebook page that you might benefit from, I know I have. https://www.facebook.com/groups/180180118669211/ This is the Polycythemia support group

  • Post #4
  • Sat Feb 16, 2019
Hi, I'm Nancy L D.

I have Essential Thrombocythemia ……are there any support groups or discussions regarding this? Thank you, Nancy

  • Post #5
  • Sat Feb 16, 2019
Hi, I'm Sharon L P.

I have Essential Thrombocythemia also and would like to know about support groups or discussions. Thanks, Sherrie

  • Post #6
  • Sat Feb 16, 2019

I have polycythemia vera. I was diagnosed in June of 2018. My phelbotomies seem to really help most of my symptoms. As far a cause they really don’t know how it happens, they are guessing mine is due to a severe bout with the flu, because after I had the flu I had all kind of issues, was like it pin pointed back to that. I have jack 2 so who knows how long I have had that. Jak 2 is a aqquired gene mutation, I wasn’t born with it but developed it, possibly from the flu.

  • Post #7
  • Mon Feb 18, 2019

I have primary pv, so maybe that didn’t help. sorry

  • Post #8
  • Mon Feb 18, 2019
Hi, I'm Larry C A.

I’ve had essential thrombocythemia for over 4 years. Mind is well controlled with hydroxyurea. It hasn’t caused any changes in my life style thus far, and hoping it doesn’t in the future. Good luck.

  • Post #9
  • Sat Feb 23, 2019
Hi, I'm Kelly A S.
I was first diagnosed with essential thrombocythemia with JAK 2 in 1988. I never had to do anything but take an 81 mg aspirin a day until about three years ago. They did start me on hydroxyurea once my platelet cell count went over 1 million. I have had no adverse effects from it and I am doing just great. I do worry about the long-term effects of having to be on this drug however. Good luck with the treatment of your polycythemia!
  • Post #10
  • Sun Feb 24, 2019

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